At 2.24am on Christmas eve 2004 my life changed forever when my gorgeous daughter Mia was born, but not in the way I had planned. Deprived of oxygen at birth, her first few hours were very hectic as doctors and nurses fought to save her life. My wife needed emergency surgery and Mia was blue when born and whisked away amongst alarms, frantic doctors and a huge number of people that came out of nowhere. My wife’s blood loss was so bad, she spent her Christmas day receiving three blood transfusions, and I needed to stay with her. It was to be four long hours before she had stabilized and I was allowed to up to the special care unit, to see Mia.
I have always had a thick skin and an ability to cope with difficult situations, but when I saw my beautiful daughter wired up to countless machines with tubes and wires everywhere I felt pain like I have never felt before and promptly collapsed. My legs just lost their strength and I wept uncontrollably. How could I go back to my wife and tell her what I had seen, I thought? It was immediately clear that Mia’s brain had been irreparably damaged and her eventual diagnosis was of cerebral palsy or CP. Mia was to be completely physically disabled for life.
As each child with CP is different, we could only get broad advice from health professionals as to what to expect. In the first year just keeping Mia alive was a struggle, as she had major trouble with coordinating breathing, swallowing and eating. Her eating problems were so severe she was surgically fitted with a tube connecteddirectly to her tummy for fluids to bypass her mouth. Her inability to accurately control her mouth and swallow reflexes also severely impacted her communication, which meant speech was going to be almost impossible, we were told. We were devastated. None of the imaginings we had for our first child involved the level of illness she had, the trips to the hospitals, the operations and the sheer grief of it all. For Mia’s sake though we soldiered on, still determined to do our best for her.
The alternative communication solutions we were offered were impersonal, bulky and expensive and sometimes all three! I thought there had to be better ways of helping Mia communicate with us. As she grew it seemed that, although physically disabled, she was cognitively alert and aware. I worried that without a workable system of communication she could access easily, her ability to learn at a crucial age would be compromised.
Around the same time, I got an iPhone for work so I could pick e mails up when I was traveling. One night in a hotel with some time on my hands, I started looking at the Apple’s app store with the Apple slogan “apps for everything” ringing in my ears. But where was the app for Mia I thought? I couldn’t find one, but was sure I could design one that would allow Mia to communicate with us.
Not being the most technically gifted person, I engaged a software company to build a communications app that was fully formed in my head and dealt with the communication issues we faced with Mia. I wanted a system I could add photographs of people and objects Mia would recognize, rather than the obscure artwork other systems offered. I wanted to be able to add my voice to the app rather than some frightening mechanical voice, and I wanted to have flexibility to change and edit content easily.
The result is iComm, the app I have now launched for the iPhone and iPad. Feedback from parents with disabled children has been fantastic as they, like me, were completely frustrated with finding affordable ways of helping their children communicate.
Doing something productive has helped immensely with the grief and pain of Mia’s diagnosis. However, despite all she has been through, she is a very happy child whose laugh is infectious and inspires me to move on – whatever pain I feel around her condition. Doing something positive that other disabled children can benefit from has also helped me feel more positive again. I have had hundreds of e-mails from parents of disabled children around the world thanking me for creating the app, particularly as it is affordable compared to the horrifically expensive alternative communication systems that are used for disabled children. The system that is recommended for Mia in the future costs over 10,000 – and that doesn’t even include software.
Over 14,000 people worldwide have downloaded the free version of the app, and knowing the app I have created is helping other disabled children has given me real motivation to try to get the word out that there is an affordable system out there for disabled children that can be easily personalized by using the microphone and camera that is built into the iPhone.
The positive feedback from people has inspired me to build and release my second app, iSpy Phonics. This app enables children to match phonic sounds with letters to help them to learn to read, all whilst playing the age old game of I Spy. It’s highly interactive and kids are having fun whilst learning. It’s the perfect app for kids just starting to learn how to read.
Touched by the efforts I had made to help Mia, my wife nominated me to Bounty.com when they were looking for their “Real Dad of the Year”. Out of the worthy Dad’s nominated, Bounty’s members voted me the winner for 2010.
iSpy Phonics and iComm are available for download from the Apple app store for use on the iPhone and iPad. There is a free version of iComm and to get the full version you can pay an upgrade fee of $7.99. iSpy phonics is $1.99 and was recently nominated in the “best education app” category at an awards ceremony in Ireland – The Appys.
Go to www.miasapps.com to find out more and see video demonstrations of the apps or download them today from the app store on your iPhone or iPad.
by Martin Brooks
Thanks so much for this story. This kind of sharing motivates and inspires me.